Endometriosis story

  These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.

Severe symptoms

by Cynthia S

I was diagnosed with severe endometriosis (stage 4) on November 2011. I am 30 years old and starting having symptoms since I was 19. When I was a teenager I was constantly getting sick right before my period. Dizziness (where I couldn’t get out of bed all day), pelvic pain, nausea, sometimes vomiting and feeling really weak, I even missed work several times. I went to with the doctor to see what was wrong but they could never tell me anything.

Then, a few days later I was getting my painful period. One of the biggest complaints during my periods was the bloating, severe cramps and problem bowel movement. I always thought that these symptoms were normal. I got married at 22 and I began using birth control. Contraceptives were a real nightmare because I was getting sick all the time with nausea and vomiting. During the process of finding the right birth control, I started having a lot of yeast and bacterial infections, probably 3 or 4 times a year.

Then, I started getting a lot of UTI and blood in my urine. The doctors were checking me for diabetes and kidney stones. Finally, I found a good birth control that didn’t get me sick, The Nuva Ring was my saviour for several years. I was having minimal cramps during my periods and feeling better. However, the doctors were still finding blood in my urine, so they kept prescribing medication to get rid of it. But it never went away.

I stopped using birth control at 28 years old. We wanted to make sure that we could get pregnant as soon as we started trying. After I turned 29, my body started experiencing new symptoms such as pelvic aches, cramps during and after my period, pelvic inflammation, and painful intercourse during or after, more painful bowel movement during my period.

My period cramps were getting even more severe, gaining weight and problems losing weight. I was visiting my doctor many times and he could not tell me what was wrong with me.

At one moment I thought that I was creating these symptoms in my head and I had nothing wrong. So, I was trying to ignore it. Yet, my body kept telling me that something was not right, especially when I and my husband really started trying to conceive.

In the year of 2011, we started actively trying to conceive. Nine months later, nothing happened and my pain and cycle were getting worse and worse. My periods starting getting shorter than 28 days with fatigue, lower back aches, and bloating were on my daily routine.

I was getting frustrated, so I started reading online about my symptoms and I found an article about endometriosis. All of the symptoms listed on each page, were pretty much my symptoms so I tried a different doctor who had many years of experience. My first visit was a success. He said that he was 90% sure that I had endometriosis. He also said that the only way to find out was through a laparoscopy. He did a pelvic exam to check me for tenderness and he said I was really tender.

When I left the doctor’s office I immediately called my husband and told him about the laparoscopy. He told me to go ahead and schedule it. I was so afraid to get this procedure, not because of the pain after the surgery but because I thought “What if they don’t find anything”, I am spending a lot of money for this surgery and if they don’t find anything I am going to be emotionally frustrated and financially broke.

The day finally arrived and I was nervous but happy to find out if something was wrong with me. After the surgery my husband came to me and I was still waking up from the anaesthetic and all I could hear was that they did find many problems and I had severe endometriosis. They found endometriosis in my colon, my uterus was completely covered in endometriosis tissue and one of my fallopian tubes was wrapped around my uterus. I was so relief to hear that I they found something wrong. But I was also sad that they couldn’t remove everything.

They said that they were able to remove 60% of the endometriosis and I had to get on the Lupron for 3-6 months to get rid of the rest. After the surgery, I got a little depressed. I was happy one day and sad the next day. I thought that after the surgery I was going to be a normal person again, but that didn’t happen. I had to get on the Lupron because the pelvic pain.

So here I am trying to find answers to alleviate my symptoms. I hope this can help other women who suffer from many symptoms and don’t know what is wrong. It took me more than 10 years to find out. So get checked and get a second opinion. I had an OBYN for 10 years and he couldn’t ever find out about my endometriosis, until I tried a new doctor with experience and he really went deeply to find out what was wrong.


Name: Anonymous

Title: Finally found an endometriosis specialist and am now pain free

I have been suffering from endometriosis symptoms for 9 years. I had gone from doctor to doctor and was told "it's just part of being a woman". My life for the most part was miserable. Back and pelvic pain, frequent urination (20 or more times a day), migraines, nausea, painful sex, periods would put me in bed for at least 2 days in severe pain that I could not get relief from.

I had 3 miscarriages, and doctors could not find the reason why. When I was hospitalized for extreme ovary pain, they said it was due to a cyst and gave me norco. It took my doctor 9 months before she finally decided to do surgery to remove the cyst, and this is when she found I had endometriosis. I was told it was only stage 1 and it was left alone, and I was put on birth control pills.

Two months later the pain in my ovary was back. I decided to find a new doctor who said it would go away. Months later after it was still causing me problems, along with all the other endometriosis symptoms, she recommended Lupron.

After extensive research and reading experiences others had on this drug, I learned it was HORRIBLE for your body, and did absolutely nothing for the endometriosis, other than mask the pain.

I decided to take things into my own hands and spent hours researching specialists and treatments for endometriosis. I finally found out that the only way for endometriosis to be properly removed was by a TRUE endometriosis specialist. There are only 10 in the whole country!

I was so fortunate to find Dr. Andrew Cook who took my suffering seriously. I was in surgery for 6 hours. He had to remove half of my ovary due to the endometrioma, that the other doctors didn't take seriously, as well as remove all the lesions (endometriosis)from all over my body including my bowels, lungs, uterus, and tubes.

He told me that I had stage 4, not stage 1 endometriosis and that all my organs including my bladder, uterus, and ovary were all stuck together from the endometriosis.

Since the moment I woke up from surgery I had finally felt the relief I had been looking for. It is now 8 months later and I have not had any pain from endometriosis since surgery.

Women need to research and find true a endometriosis specialists that cares about their pain, and can actually give them relief. Normal doctors will perform laparoscopies year after year on you, and because they do not excise the lesions, you will continue to have pain. I encourage all of you to look for these specialist. You deserve to have a pain free life!

Name: Joanne

Title:Endometriosis specialist needed

I too need to find a decent specialist in endometriosis and your post caught my attention. Do you know who and where the top ten are?

I live in South Wales and have had enough now. I had a laparoscopy 6 months ago and had a 5cm cyst removed, only thing was when they did the operation to remove the cyst it turned out there was extensive endometriosis. My ovary and tube was twisted, pulled down and buried in my abdominal wall with scar tissue and adhesions.

Also in the pouch of douglas and sacral ligaments. I am still not feeling better and suffer with upper left abdominal pain, rectal bleeding, burning in my bladder, especially when passing urine. I also have hot flushes, painful intercourse, hair loss and thinning, and really heavy, extremely painful,clotting periods.

I have aches and pains all over my body. Also electrolytes and white blood cells in urine. I have had urodynamic studies done years ago before endometriosis was found, and a colonoscopy which found nothing. So no answer for rectal bleeding either!!

I have been to see the gyn who removed my endometriosis today, and basically he says none of these symptoms are from endometriosis. Not even heavy bleeding apparently. So it's goodbye to me, he says he can't do anything else.

So now I need to pay and find someone else. He also mentioned he could spend more time and money on me, just to find nothing, and that he needed to hurry up because it was time to go home for tea. I am not very happy. I have had to nag to see him again since the operation, waited months just to be told nothing.

I must have a 2nd illness, but I am not so sure as the gastroenterolist says its gyne and endometriosis!! I would be grateful for anyone's advice?? Tests don't seem to find much, but yet I can't seem to lift heavy things, walk far or stand for long any more because of pain.

Please let me know if you know of any decent gyne in the UK who can help me please. I also had pains when breathing in, around my period time, and ended up with pleurisy. I personally don't believe I have got several illnesses. I don't think these things are all a coincidence. If I have got other illnesses why are they not showing up on tests!!?

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